Discussions By Condition: Urinary conditions

I can't stand this anymore

I don't know what to do, but my bladder is making my life awful. I need to find out what's wrong and have it fixed. I've had these problems for 8 years now.

I'm a 28-year old woman. These are my symptoms.* Slow urine stream (varies from day to day, though)* Stream stopping and starting* Splitting of the stream* Feelings of pressure, as if I have to urinate, occurring anywhere from below my belly button to my genitals - these happen day and night - sometimes they abate for a few weeks, and then they come back* Occasional feelings of stronger urges, like spasms, but even if I try to let go and just go with the spasm, either there's no urine behind it or the urine isn't able to get out, because I never have incontinence* Passing small amounts of urine and then feeling like I have to go again within 30-60 minutes* Being unable to have sex - painful penetration, feelings of having to urinate, or feeling like I get a little excited and then I get blocked up - these problems started before the urinary problems - I can't even masturbate now

This is what I don't have:* No incontinence* No pain

These urinary symptoms started in 2000, after a UTI for which I received sulpha drugs, which I turned out to be allergic to and had to stop early. But since then, no infections have shown up in urine samples. But the sexual stuff started a few months prior. Both started after a fall on my tailbone (in winter 1999), but I don't know if they were caused by the fall or just happened to occur afterwards.

I went to a gynecologist/"bladder specialist" a few years ago and she did a uroflow test. It was really hard, as the catheter was very painful. She said that my stream was about 1/3 as fast as it should be, and I saw that the pattern of voiding (this was after water was put into my bladder and then it was drained, through the catheter) was a zig-zag rather than the single curve you're supposed to have. The doctor told me I probably had a narrow urethra, and that the procedure for that was to get my urethra stretched.

I've been afraid of going through with that procedure, because:(a) I've heard that the procedure can make it easier for infections to find their way into your bladder(b) I've heard the benefits could only be temporary(c) I'm worried about possible damage to the urethra(d) I haven't had anyone actually look at the bladder or urethra yet - no cytoscopy, no visit with a urologist(e) I don't know if the urethra width is the problem or if it's, say, a muscular issue - either the pelvic floor being in spasm or an issue with the nerves that go to the bladder, say because of compression in the lower back - shortly before I had my first sexual problems, I had a fall on my tailbone, and I keep wondering if that threw me off - I have a rotation in my hips now, which makes one leg look like it's shorter and the foot be at a slight outward angle while resting, and occasionally I feel dull pain in my lower back

I'm scared of having to go for more invasive tests, but I want to resolve this somehow. First I was thinking of having a pelvic ultrasound, though I don't know what they look for. Then I thought I could ask a urologist if they could give me some kind of sedation drug (where you're in dreamland for 45 minutes and then you wake up not remembering what happened) while a cytoscopy is performed, and sedation again if they need to perform any stretching or other procedures. But I'm really nervous that they'll be overlooking something. How do they know which problems are structural and which are functional? If I do have some kind of muscle/nerve problem, would they pick up on that? I already had an MRI done of my lower back, and they said it was fine, but again, I don't know what they were looking for. On MRI's, can they discover if nerves are compressed?

I saw a pelvic floor physiotherapist for a while, and she treated some trigger points in that area, and also told me to do Kegel exercises. I try the exercises sometimes, but when I squeeze too much, my tailbone hurts. I think they were supposed to calm down the bladder by tightening the urethral sphincter so the destrusor muscle (the antagonist) would relax, but I'm not sure if they're doing much of anything.

Can anyone relate to my symptoms? I read websites, but it seems that nothing matches the symptoms that I have. I don't have incontinence, which rules out overactive bladder. And I don't have pain, which seems to be a major feature of IC. Could I have a urethral stricture (the narrowing the doctor talked about)? What else could it be? What tests should I ask for to make sure all possibilities are covered?

18 Replies:

Has anyone mentioned Interstitial Cystitis to you yet? I have it and it is difficult to get a diagnosis. You can find alot of info by plugging the condition into a search engine. Ask.com is good. You sound like all my symptoms I went for years undiagnosed. Please look and see if you relate tot he condition and I can share more info with you about it. Take care and let me know.

Please consider alternative treatments for your condition. Interstitial Cystitis and other bladder problems are treated very successfully with acupuncture, herbs, and naturopathy. Please log on to www.acufinder.com and type in your zip code to find an acupuncturist near you. Ask them if they also specialize in Chinese herbal medicine. Western treatments for genitourinary conditions can be invasive and cause further problems - I don't blame you for being cautious. Hope this helps.DOM

Thanks for the replies. Yes, I've read about IC. I have doubts about having that, because I don't have any pain, and pain is supposed to be characteristic of the disease, isn't it? I wouldn't rule out the possibility, but I would need to have it confirmed by a doctor, ruling out other diagnoses. If one were to go about getting an explanation for these symptoms, what would the correct steps be? Is there a list of possible causes that can be tested for one at a time until the true cause of my problems is discovered? What particular tests would be helpful, in what order, to cover all possible bases? I am concerned, also, that even with a diagnosis, say of IC, the existing treatments don't offer much hope. I've read that bladder instillations only provide temporary relief, that stretching the bladder is also only temporary, and that even Elmiron isn't as effective as it was thought to be. At least the treatments involving pelvic floor physiotherapy and relaxation are part of the overall plan; I believe in those more. nccarol, what help have you been given for your IC, and has it made a lasting difference? Addressing accuan: I've lost a lot of my faith in alternative treatments. It seemed every time I used to go to a naturopath, they would diagnose me with "yeast" and put me on this impossible diet. I tried herbs for a while, but I wasn't very consistent with them. I suppose I could try them again, but it's hard to keep going when I don't even know if something is helping. How long do you try particular herbs before knowing if they even help you? And as for acupuncture, the needles were very painful when I tried it, and I don't want to try it again. A few years ago I tried Chinese massage, but I don't think it did much either. Do you have a personal story of healing bladder problems with alternative treatments, though? I'd be interested in hearing it. For a while I thought deep tissue massage was helpful. Now I'm thinking of loosening up my lower back, which is overarched (hyperlordosis) and rather short (I've been told before that the muscles there are hypertonic, i.e. weak and tight), just in case some nerves are being compressed. I do yoga several times a week, and I've been adding in new poses based on this book called Back Care Basics. Last night I was having a terrible time, but then my mom (I live with her) made the suggestion of rolling over onto my side and putting my knees up like in a fetal position. Almost right away, the pressure feelings went away, and all night long I stayed sleeping on one of my sides and the sensations didn't come back. I notice that when I lie on my back at night, the arch really seems to pull, and the sensations get worse, making it hard to sleep. I'll try lying on my side again tonight and see how I am. Thanks,S.

I as well have the pelvic floor dysfunction as well as fibromyalgia. My bladder symptoms were very bad in my younger years before diagnosis. I have not opted for any of the invasive radical treatments and personally I would not even consider them an option unless they were a guarantee and theya re not. I have been alot better since my hysterectomy for endometriosis and fibroids but get flares still. I use prelief to take some of the acidity out of the foods, pyridium plus for burning, levsin although drying for spasms as needed. I am on Paxil and clonapin for anxiety and depression. I have a pain doctor for the fibromyalgia and keep the pain meds to a minimum though I don't want to be addicted. Not much as far as pain meds could do enough for the bladder alone. I have had teh pelvic floor in with that but have not gone into the treatments yet for that. I am 48 and have suffered since about 16-30yrs old before a diagnosi. Chiropractor has helped the back pain some. Thats so far what i have not. IC is not curable as of yet but keeping the severe pain away is the best I can hope for.

May I ask if you have tried the alternative methods for Interstitial Cystitis and do you have it? Curious as to what experience and help you have received from these methods in your own personal experiences.

Addressing accuan: I've lost a lot of my faith in alternative treatments. It seemed every time I used to go to a naturopath, they would diagnose me with "yeast" and put me on this impossible diet. I tried herbs for a while, but I wasn't very consistent with them. I suppose I could try them again, but it's hard to keep going when I don't even know if something is helping. How long do you try particular herbs before knowing if they even help you? And as for acupuncture, the needles were very painful when I tried it, and I don't want to try it again. A few years ago I tried Chinese massage, but I don't think it did much either. Do you have a personal story of healing bladder problems with alternative treatments, though? I'd be interested in hearing it.- I am sorry you haven't had good experiences with alternative practitioners. Just like Western MD's there are good ones and bad ones. The naturopath who put you on candida diet had good intentions, but it is extremely hard to stay with this diet as it is very restrictive... Candida can cause chronic urinary problems. Diet is crucial - if you can avoid high fructose corn syrup it will really help your symptoms. It is found everywhere you need to read labels. But here is what I think works best: Threelac is a food based supplement from Japan that kills candida overgrowth. It is a great product as it works without having to do the restrictive diet. Google this for more info and visit www.wholeapproach.com and www.candidasupport.org for info on candida. You really must commit to two months for a candida cleanse. Candida is tenacious and hard to get rid of. However, if you don't feel any different taking the Threelac they have a money back guarantee. Most people with candida feel MUCH better taking this product. I always stock it in my clinic and have used it myself. I am wondering if you went to an acupuncturist who was Chinese or Asian? Chinese practitioners are very agressive in their needling techniques...the needles can be painful if you get treated by someone from China or trained in China. I personally don't think this is a good technique and am very gentle with my patients. Acupuncture is usually very helpful for this condition, as well as helping incontinence and night urination. Basically I am saying please don't give up on your options. There is help out there - try the Threelac and see how you do. Best of luck.DOM

S.A. I think you should go back to when you fell on your tailbone. Ask the doc'sat your imaging center to look at the MRI's again , specifically the coccyx area.Falling on that spot will cause any number of things to go wrong. Google theword "coccyx", maybe add "injury" and look around. I think you'll find some re-lated symptoms. best wishes

Yes, I Can Relate. The Same Story. I Had A Uti Infection Last Summer, Took Antibiotics For It And Then For The Past 3 Or So Months Feels Like I'm Fighting On Off Every Other Day.It's Crazy And I Did The Home Test Twice Only To Show Negative On Infection. I Went To The Dr. Today She Did The Fast One And It Showed Negative. She Sent It To The Lab To Be Tested More Thuroughly And I'll Find Out On Monday If It Is An Infection. If Not What Is It?I'm In A Blur Over This Too.

Thanks for the replies. Yes, I've read about IC. I have doubts about having that, because I don't have any pain, and pain is supposed to be characteristic of the disease, isn't it? I wouldn't rule out the possibility, but I would need to have it confirmed by a doctor, ruling out other diagnoses. If one were to go about getting an explanation for these symptoms, what would the correct steps be? Is there a list of possible causes that can be tested for one at a time until the true cause of my problems is discovered? What particular tests would be helpful, in what order, to cover all possible bases? I am concerned, also, that even with a diagnosis, say of IC, the existing treatments don't offer much hope. I've read that bladder instillations only provide temporary relief, that stretching the bladder is also only temporary, and that even Elmiron isn't as effective as it was thought to be. At least the treatments involving pelvic floor physiotherapy and relaxation are part of the overall plan; I believe in those more. nccarol, what help have you been given for your IC, and has it made a lasting difference? Addressing accuan: I've lost a lot of my faith in alternative treatments. It seemed every time I used to go to a naturopath, they would diagnose me with "yeast" and put me on this impossible diet. I tried herbs for a while, but I wasn't very consistent with them. I suppose I could try them again, but it's hard to keep going when I don't even know if something is helping. How long do you try particular herbs before knowing if they even help you? And as for acupuncture, the needles were very painful when I tried it, and I don't want to try it again. A few years ago I tried Chinese massage, but I don't think it did much either. Do you have a personal story of healing bladder problems with alternative treatments, though? I'd be interested in hearing it. For a while I thought deep tissue massage was helpful. Now I'm thinking of loosening up my lower back, which is overarched (hyperlordosis) and rather short (I've been told before that the muscles there are hypertonic, i.e. weak and tight), just in case some nerves are being compressed. I do yoga several times a week, and I've been adding in new poses based on this book called Back Care Basics. Last night I was having a terrible time, but then my mom (I live with her) made the suggestion of rolling over onto my side and putting my knees up like in a fetal position. Almost right away, the pressure feelings went away, and all night long I stayed sleeping on one of my sides and the sensations didn't come back. I notice that when I lie on my back at night, the arch really seems to pull, and the sensations get worse, making it hard to sleep. I'll try lying on my side again tonight and see how I am. Thanks,S.I understand you. I sleep on my side too

Though I am male, not female, I have everything you list for symptoms exactly. The difference for me is that being male, I cannot avoid masturbation, which leads to a so-called vicious cycle. I would venture a guess you have a muscle tension disorder.For my own problem, my theory is that one or more of the pelvic floor muscles is tight (there are diagrams of all the different muscles online if you haven't seen them), and that sexual activity while the muscle is in this condition (including the Kegels exercises) makes it worse. I think that doing Kegel exercises while the muscles are in this condition makes the problem worse. I've complained to many web sites about how damaging Kegels exercises can be to some people. Kegel exercises were meant for people who don't use those muscles much, to make them stronger -- not for people whose muscles are strained and would be damaged by any further activity.I have found that just the right kind of rectal massage (from a sexual partner) solved my problem, but I only experienced it once! I've tried many times by myself and can't seem to reach the right muscles or use the right technique, and sometimes it blocks the sexual feelings if done wrong (in the same way that deep tissue massage can either be really great or really painful depending on the person's technique) so I'm trying various curved objects, longer objects, etc. Finding someone to do it for me over and over again would be difficult but it would solve my problem, I think.There may be a variety of other methods to reduce the tension in the muscles as well -- there's some research on an effective treatment which is applying low frequency oscillating current to those muscles, to get them to relax. The research didn't say anything about sexual dysfunction impacts.

Your symptoms sound like mine. I've never heard of anything that sounds so much like what I have. I feel like I have to pee all the time. I have to push to go and after I finish (aka am unable to push anymore urine out) I still feel like I have to go. But nothing I've read (and I've read a lot) matches up with what I go through. Some things seem like its IC, but most of it doesn't match up and my urologists (all three of them) are at a loss. But something happened last night. I started taking probiotic pills 3 days ago. And last night, I went pee without having to push. That hasn't happened in 4 years. I'm still in shock and I'm trying to stay calm, but something is different. I think I might have a candida problem and the probiotics are clearing up the yeast! Its been so hard going through this - I know how hard it is to find a comfortable way to sleep! Its almost hard to type this because part of my coping mechanism has been to ignore the problem and getting my hopes up is scary. But I wanted to suggest the idea of trying probiotics. I would be really interested to know if you see the same improvements that I have.

Your symptoms sound like mine. I've never heard of anything that sounds so much like what I have. I feel like I have to pee all the time. I have to push to go and after I finish (aka am unable to push anymore urine out) I still feel like I have to go. But nothing I've read (and I've read a lot) matches up with what I go through. Some things seem like its IC, but most of it doesn't match up and my urologists (all three of them) are at a loss. But something happened last night. I started taking probiotic pills 3 days ago. And last night, I went pee without having to push. That hasn't happened in 4 years. I'm still in shock and I'm trying to stay calm, but something is different. I think I might have a candida problem and the probiotics are clearing up the yeast! Its been so hard going through this - I know how hard it is to find a comfortable way to sleep! Its almost hard to type this because part of my coping mechanism has been to ignore the problem and getting my hopes up is scary. But I wanted to suggest the idea of trying probiotics. I would be really interested to know if you see the same improvements that I have. Probiotics are fantastic for getting your flora back in check. Most genitourinary or gastrointestinal problems would be helped by a good quality probiotic. Definitely worth trying and hope you continue to find relief! Best wishesDOM

I am also another male that has had similar symptoms that started 6 years, currently 21. I have gone to the doctor for physical exam, urine samples, blood samples, and used this other thing that I can't remember the name of and they never found anything. I have not felt normal in years, always feeling like a pressure, never feeling empty, sometimes I feel a bit of pain. It stared one morning when going to class in middle school, and I had the urge to urinate, so I went to the restroom and had to go what seemed like twice or three times the normal amount. In the beginning I would go maybe 12 times a day and once or twice at night, now its usually like 6 or 7 times a day now but that uncomfortable feeling is pretty much always there.

I am also another male that has had similar symptoms that started 6 years ago, I am currently 21. It stared one morning when going to class in middle school, and I had the urge to urinate, so I went to the restroom and had to go what seemed like twice or three times the normal amount. In the beginning I would go maybe 12 times a day and once or twice at night, now its usually like 6 or 7 times a day now but that uncomfortable feeling is pretty much always there. I have gone to the doctor for physical exam, urine samples, blood samples, and they used this other thing I think is like a sonograph but never found anything. I have not felt normal in years, always feeling like a pressure, never feeling empty, and I sometimes I feel a bit of pain while going or after. I was given a few different medicines but none have fixed the problem, don't remember the name but I know a few of them made my urine orange or sort of red. Some of them just made it a bit easier to go and finish.

I am also another male that has had similar symptoms that started like 6 years ago, I am currently 21. It stared one morning when going to class in middle school, and I had the urge to urinate, so I went to the restroom and had to go what seemed like twice or three times the normal amount. In the beginning I would go maybe 12 times a day and once or twice at night, now its usually like 6 or 7 times a day now but that uncomfortable feeling is pretty much always there. I have gone to the doctor for physical exam, urine samples, blood samples, and they used this other thing I think is like a sonograph but never found anything. I have not felt normal in years, always feeling like a pressure, never feeling empty, and I sometimes I feel a bit of pain while going or after. I was given a few different medicines but none have fixed the problem, don't remember the name but I know a few of them made my urine orange or sort of red. Some of them just made it a bit easier to go.

Hii, after searching tonnes of websites about this i have never **m across any1 who has had such similar symptoms 2 me!! As u sed, most ppl complain of pain wich cud b interstistial cystitis if ther is no infection but i dnt typically get the pain whilst urinating eiva.. its mor of a discomfort of the general area than a pain (realy hard 2 explain)... also can't have sex or even use tampons... it irritates my bladder 2 much n makes my symptoms MUCH worseI've had these symptoms 4 3 yrs n i hav been seein a urologist 4 around 2 and a half years.. i hav had a cystoscopy, urethral dilatation, bladder scans, normal ultrasound scans, MRI scan of my pelvis, a urodynamic study n countless numbers of urine samples tested 4 everything including diabetes... hav also tried MANY different pills, different anti-biotics, antispasmodics, even pills that r actually 4 enlargement of the prostate in men :-/ (I am a 20 year old female) n NUFFIN has helped at all.. they hav found nothing wrong on all of these tests other than the fact that my urethra was very narrow wich they found out durin the cystoscopy n urethral dilatation (stretching the urethra)... i had this operation (it was under general anaesthetic) over a year ago n i hav 2 admit it did NOT help at all! However, as this is the only problem they hav found they r goin 2 try it again (apparently its only 60% effective)... the hope is that i do hav urethral syndrome (meaning my urethra is 2 narrow n inflamed) n the operation was just unsuccesful the 1st time... i hav a friend wiv a similar problem who had 2 hav 3 cystoscopys and urethral dilatations b4 it helped her but at least it did in the end! I wud realy recommend getin referred 2 a urologist n goin thru this kind of process of elimination 2 try n find out wot u hav... yes the idea of havin things inserted in2 ur urethra is not pleasant but the cystoscopy is usually carried out under general anaesthetic (i'm sure u can ask them 2 do it this way, my friend did) n its not a major procedure at all... u can go home the same day n my symptoms wer only actually worse 4 a day of 2 after... realy hope this next 1 works... havin it in a few weeks!Hope this helps!xxxx

Are you still suffering from this problem.The clue to the problem is the sexual dysfunction that you had prior.You need to see a Visceral Osteopath (That has studied The work of Jeanne-Pierre Barral) who does uro-genital manipulation. you can look for someone in your area at www.iahp.com or use google.I am being very specific about the type of training the osteopath had for a reason - they have the correct approach and techniques to be most likely to help you.VM

TRY A GLUTON FREE DIET I have had similar symptoms and tests were never conclusive. Seen specialists of all kinds and decided to try diet starting with nothing artificial etc. after 6 mths of experimenting sometimes feeling ok sometime have full bladder uncomfortable feeling I have now gone on a Gluton Free Diet and have gone from peeing several times during the night and being unable to concentrate for wanting to pee during the day , to feeling absolutly normal most times. Gluton Free can be complicated and you will make mistakes often in the beginning but it is worth a try.